I just wanted to update on what has been happening because there has been an emergency that has occurred today. We got extremely bad news today and to be honest… I am really in a whirlwind of everything going on that I don’t know how clear this update might be. So please bear with me. If you have any questions, please feel free to ask.
Today has been one interesting day. Thank goodness it is almost over. I don’t think I can take anymore news today. My plate literally has been filled to the max and I don’t think that I can add another thing to it at all. It has come down to me being literally in a “life and death” emergency state right now. Not only is my bloods extremely low and I can go into cardiac arrest at any moment, but my GI system is completely shot. It turns out that I need emergency surgery on my GI system, but unfortunately the hospitals around here are not equipped to handle my situation. I don’t know what is going to happen, but I do know that I am not supposed to have any stress because of how bad my bloods are and it can easily affect my heart and cause an arrhythmia or cardiac arrest, but that doesn’t look like it’s going to happen.
I went to the gastroenterologist today to start my day off. I saw him first thing this morning and was placed on a new medication called Linzess. It just came out on the market and even though it isn’t expressly used for my illness, we are hoping that it will help with the Gastroparesis and my GI system. The doctor doesn’t have any other patients on this medication with my problem of course, so I will be the first. The doctor is planning on putting me as a “case study” and if it is successful, he plans on writing me up in the journals and this way I can hopefully help others.
However, even though it does sound hopeful that it might be able to help me, there is of course a problem because nothing in my life comes easily and without a problem. Like always there is always a problem with this situation and the problem with this is that it is a very expensive medication and we are not covered by insurance. So I don’t know what I am going to do because I really want to try it. Even though this new medication will not “cure” me or anything because it is not going to the underlying problem, at least it is putting a bandaid on the problem and could HELP. But the doctor did state that we really need to stop putting bandaids on the problem and get to the underlying root of the problem because I am running out of time and I am getting significantly worse. He said that I am rapidly deteriorating and have worsened significantly since the last time he has seen me. He said that he is really extremely fearful for my life… especially since my bloods are so very low. He said that I am basically a “walking miracle” right now to even be living because people normally don’t live in the state that I am being the weight that I am, BMI that I am, and having the low bloods that I have. He said that I definitely can’t afford to go lower in any of them because I will definitely die. It would be a death sentence.
Therefore, the doctor said I really need to get to Mexico to get to the root of the problem ASAP. But of course that is all dependent on that we receive the funds. Unfortunately the Ketamine Coma that I need to have in Mexico isn’t cheap, as it costs over $100,000 and we cannot afford it alone. Therefore, until I raise enough money, which I have been so desperately trying to do so… we cannot go. We have a date set to go to Mexico to have the treatment in July, so we are hoping to have all the funds by then. But of course it is all dependent on the rest of the world so I am really hoping that a “miracle” will take place and there will be plenty of donations. My life literally rests in the hands of the rest of the world. I just hope also that I make it to July because I am rapidly deteriorating.
When I went to the GI doctor, it was also determined that I have to undergo another endoscopy. The doctor doesn’t like how things are progressing and therefore, he wants to do another endoscopy as soon as possible to see what exactly is happening especially since I have been having difficulty swallowing. Even the littlest things that I have been able to swallow in the past such as the ice pops, egg-whites, and ice-cream have been impossible to get down lately. So the doctor wants to see exactly what is going on. We cannot do a colonoscopy because my GI tract is so horrendous that they can’t clean me out. Even with an NG tube they can’t do anything to clean me out, as I had an NG tube and they had to remove it because after pouring in 1/4 liter of GO-LITELY… the tube started to back up and the mixture was back flowing out of my nose. Nothing just seems to clean me out! So an endoscopy is the next best thing especially when I am having difficulty swallowing. The doctor also wants to see what is happening because since I am vomiting constantly, he wants to see what damage is occurring to the esophagus. It’s just a mess.
So I am scheduled to have the Endoscopy on Friday, May 2nd. The doctor wanted to have it done as soon as possible, but he had to be careful because of my low bloods. He is hoping that my bloods can get up a bit beforehand. But he also wanted to get it done before I leave for California, as we are planning on leaving May 13th. So everything is scheduled in the hospital for an endoscopy for that date. However, now with the horrendous news that I received tonight… I don’t even know what is going to happen.
After leaving the doctor’s office, I proceeded to go to Mount Sinai Hospital to have a CT Angiogram. It was so painful and I was literally screaming the entire time because the dye and the needle was really causing me so much pain. Due to my illness, I am so hypersensitive that even saline solution in an IV causes me horrendous pain. My dad said that he literally heard me screaming through the soundproof doors. What a day I endured because not only did I suffer from the pain of the needles and infusion of the dye, but it also wreaked havoc on my body because it triggered off my illness further by stirring up the autonomic dysfunction. The infusion made me burn up so badly and when your body can’t really adjust or acclimate to temperature changes, it really affects you. The nurses kept asking me if I wanted ice to help with the burning and pain, but that would be the worst thing to do to me. Little did I know though that things were only going to get worse from there.
We weren’t supposed to get the results to the angiogram until about 24 hours later. At the earliest, it would be the end of the day that we were told that we “might” have heard something. I was having the angiogram done because we wanted to see if we can further determine why the edema was occurring in my legs. We didn’t know if it was because of a clot, my disease, proteins spilling out, etc. However, we ended up hearing the results only about 4 hours later because there was a real emergency that needed urgent attention. I never thought I would hear what I was going to hear.
When I got the phone call from the doctor that ordered the test, which was my vascular surgeon, I wasn’t expecting to hear the news that I was about to hear at all. He told me that I needed to see a surgeon immediately and I needed to get to a hospital as soon as possible because they found something on the CT Angiogram that needed urgent attention.
The doctors told me that they found a severe case of a bowel obstruction that needed prompt and urgent attention. However, this wasn’t just an ordinary bowel obstruction or a minor one. In fact, the obstruction was so bad that my entire colon was dilated so much that it was amazing how much a colon can dilate. It was also so dilated that it was compressing all my other organs and it even made the bladder collapse, which could be the reason why I always feel like I have to go to the bathroom. The results also showed that I had a complete obstruction in both the small and large intestines, and they also found a colocolic intussusception.
The vascular doc said that I needed to see a surgeon immediately because of this condition, but due to my circumstances and rare situation, he didn’t know best how to proceed and therefore, be wanted me to discuss everything with one of my GI doctors. So I called my GI doctor and he finally called me back tonight to go over everything. Little did I know what I was going to be in for. This is really bad.
When I spoke to my GI doc, he told me how bad this blockage and obstruction really is. He told me also how rare and how horrible the colocolic intussusception is as well, and he also said that it was urgent that this be taken care of because I can easily die from it. I can easily go into Sepsis and I can easily die from it. The problem is though that even though I need urgent surgery, there really isn’t a place to have the surgery because I need a hospital that is not only capable to do the surgery, but a hospital that is capable of dealing with my overall condition, as I will need ketamine around the clock and even be placed directly into a ketamine coma afterwards because otherwise my disease will surely become exacerbated and spread. Unfortunately there really isn’t any local hospitals that can care for my overall situation in the area and the best places to really go is California or Mayo Clinic. However, California is on the other side of the country and I need urgent attention now, and Mayo Clinic doesn’t take my insurance at all and we definitely wouldn’t be able to afford a huge surgery like this.
This is no little problem. The doctor explained to me how life-threatening and how big of a deal this problem really is. He told me that my intestines are like a telescope. You know how a telescope has each piece going inside one another? Well, that is basically what my intestine is doing. It is the enfolding of one segment of the intestine within another. Intussusception occurs when part of the bowel or intestine is wrapped around itself producing a masslike object. In other words, it is the infolding (telescoping) of one segment of the intestine within another. When the segment of bowel telescopes into a more distal segment, it drags the associated mesentery, vessels, and nerves with it. This results in compression of the veins, followed by swelling of the region leading to obstruction and a subsequent decrease in blood flow to the affected part of the intestine. If the blood supply is greatly reduced, the involved intestine may swell, causing an obstruction, or even die (become gangrenous) and bleed. It also may rupture and lead to abdominal infection and shock. Additionally, there may be perforation or hole in the intussusception bowel that can cause a life threatening infection in the peritoneum (a layer of tissue that protects the organs and intestines within the abdominal cavity).
The doctor said that I need this taken care of immediately, as treating intussusception by reduction (alleviating the source of blockage) is an urgent and emergency procedure. He said that my intestines really need to be detangled, taken out, and decompressed. He said this is no “little” operation whatsoever. He said that it is going to be one MAJOR operation and it needs to be done urgently. Yet, we don’t know how best to proceed. Therefore, after speaking to the doctor, he is going to speak to doctors, surgeons, etc., tomorrow in the hospital and we are going to have a meeting tomorrow afterwards to learn best how to proceed. Time is definitely of the essence, but we can’t afford to jump the gun because it can easily be the wrong thing to do.
I knew something was wrong because things really took a turn for the worst lately. I have been feel worse than ever lately and it has been literally impossible trying to go to the bathroom. Even the nausea and vomiting has worsened. Even the smell of the mucous that was being expelled has changed lately, as the mucous smelled because the doctors said that I was literally “rotting” inside. He said that since nothing was moving inside of me, whatever I was taking in and the littlest that remained in me and didn’t get vomited back up… whether it be meds or food… it was just “rotting” because it had no where else to go.
I knew that something like this was going to happen because we were wasting so much time. The doctors kept saying that I was a “time bomb waiting to detonate.” I guess they were definitely right. I knew that we couldn’t wait so long, but what choice did we have? You can’t get blood from a stone and unfortunately we ran out of money to pay for the treatment that I need. That is why we desperately need help through donations. We need it because not only do we need help to pay for this current problem, but we need it to pay for my other medical expenses… especially that radical medical coma in Mexico before anything else happens or worsens.
So we are all freaking out in the meantime of what is happening because we don’t know what is going on. All we know right now is that I need surgery immediately and my life is at stake, yet the hospitals around here are not really “equipped” to do the surgery because of my situation. So I don’t’ know what is going to happen. I guess we will find out tomorrow because the doctor is having that meeting with us after he discusses everything with other colleagues in the hospital. This is a disaster.
So this is the newest thing to occur. Of course I will let you know more when more info becomes available. I just wanted to make you aware of what is happening in case something should happen or if I end up in the hospital or something because anything can happen at any moment.
In the meantime, I am scheduled for another ketamine coma/infusion for Wednesday. However, with everything happening now with my GI tract, I don’t know what is going to actually be taking place until the doctor speaks with us tomorrow. Before all this was known about the colon and blockage, the plan was to go for the ketamine coma/infusion and it was hoped that I would be given medication through IV that would essentially raise my bloods hopefully. In order to raise my bloods, the meds have to be given through an IV and it would be extremely painful to a regular and normal person … let alone someone as hypersensitive as me. So since it would be so much worse for me and I wouldn’t be able to tolerate it, they were hoping that I would be able to get it during the ketamine infusion so I wouldn’t be conscious and I wouldn’t feel it. After all, something has to be done to raise my bloods because they are so critical as of now that I can literally die from cardiac arrest at any moment.
I want to also thank Jaime Shorten for starting a fundraiser that will hopefully raise money so that I can have it for my medical treatment and so I can hopefully be able to go to Mexico in July for the lifesaving Ketamine Coma that I desperately need. Jaime is hosting an ONLINE ONLY Pampered Chef party. You DO NOT actually go to a party! It’s all done online. All orders can be placed online and shipped to Jaime for pick up or directly shipped to you. The website is SAFE and SECURE and your credit card will not be charged until the show is finalized and all the orders are submitted together, which will be May 5th, 2014. If you have any friends whom you think would enjoy this event, please invite them to this party as well!! The more, the merrier! In addition, each day pictures of products and recipes for you to enjoy will be posted! Here is how to order… just click this link: http://new.pamperedchef.com/pws/dayna417/guest-landing/8868939021467. If you have any questions, all of Jaime’s info can be found on that website as well. Please share this site on Facebook at: https://www.facebook.com/events/387964561341529/ Once you join this party…PLEASE invite ALL of your Facebook friends and have them join!! We want this party to be HUGE so we can raise as much money as possible! Remember… the Facebook link is “Hope for Fallon” or https://www.facebook.com/events/387964561341529/.
Thanks again for all your continued support.